But, you just can’t dump that on people. It’s just not ok to bring them down into this. This is not their life. So I play it down. I tell a white lie.

So what happened at the appointment? We didn’t get the Mickey button changed. Despite all the therapy and preparation, F’s anxiety was just too high.

So we’re going to see if we can do this with laughing gas, to put her under.

The thought of it makes something inside me itch. I don’t want to do things to her when she is “asleep”. That’s also how she feels. She told me she would be cross if we secretly did it, while she was under.

Putting aside my feelings, I was really clear to hear:

it’s not going to be done secretly. We either change the mickey when you are awake or when you are asleep from the gas. If you don’t want to be asleep, then you need to let us do it when you are awake.

But I struggle. I have always wanted her to be able to choose; that her treatment should always be administered with her consent. And not just that she says yes, but I dream that she says yes happily. But she’s frightened out of her mind. She wants to travel forward in time so that she can avoid the procedure entirely. She’s thinking of time traveland this is what she wants to do with it.

So creative.

So scared.

And I need to accept that she isn’t always going to willingly agree. Sometimes, we’re just going to have to do it anyway. We have to make the best choice for her. And she might resent me for it.

Here’s another white lie I tell:

I’m just doing what any parent would do

I tell myself this often. And while this gives credit to all the wonderful parents out there, it’s actually a way for me to minimise what I am actually doing. Parenting a chronically sick child is hard. So hard. It’s not the same as parenting. The stakes are always high. Every day. So actually I’m not just doing what any parent would do. I’m doing what other parents with chronically sick kids do. Parents with chronically sick kids, be proud. You are amazing. And yes, I am including myself.

Here’s a final white lie

that unconditional love comes from our children

That’s what we say right? That our kids will love us unconditionally. But I think that the unconditional love needs to come from us, the parents. It is our job to love them no matter what.

We parents need to love our children enough to do the right things for them, no matter how hard, even if we risk losing them. And when they resent us, stop speaking to us, dislike us, we love them anyway.

This blog is supposed to be my story: what it’s really like, living with chronic illness.
It’s my view as a “patient” myself and my view as a parent to a chronically ill child.
When I write as a parent, where is the line between my story and Fs story?
When things happen to her, they affect the whole family, they happen to us too.

Yet, they happen to her first.
So am I telling her story or mine?

That’s the question on my mind lately. It’s also why I’ve not been blogging so much lately.
Did I drift away from my story to hers? Admittedly, it is so much easier to talk about her pain than my own. That may sound strange; a mother normally feels the pain of her children keenly. And that’s true: when she hurts, I hurt. But there is nothing more sharp than our own pain.
For while we feel bad when they fall and scape their knees, it is only when we fall and scrape our knees that we realise that it burns like a b*tch.

This is the thought that I am working on this week. If you are anything like me, you totally believe it of others but somehow when it comes to you… it’s no longer a conviction but something you would like to believe.

I have read many articles on this topic but have found one thing that you need to have in place for those tips to work. I discovered it after getting advise from a child psychologist.

About a year ago we asked a child psychologist for help. F had started to have tantrums. Major episodes of anger and sadness and we just couldn’t get through to her at all while it was going on.

Given the traumas in her past and the strict medicine routine that she is on, it was not surprising.

The psychologist talked to us and to her and gave us some things to try (we had already been doing some and had some new ideas).

Then she said this:

“next time she has a tantrum, record it so that I can see what she is doing. And I can hear what you say and maybe give you some tips on how to respond”.

This was it. The moment of inspiration.

Yes, I hate my voice being recorded and really did not want to see what I looked like on film but it was something else. The thought of being observed, especially by a psychologist, that made me pause.

You see, it’s hard to keep calm, be patient, be neutral even, when you have a kid suddenly dive full on into a tantrum. They can have been annoying the hell out of you all day long and then launch into a fit and yet I’m supposed to stay calm, rational. I’m supposed to but I don’t always succeed.

So that pause told me something: that I was pretty sure that I was not helping the situation. I probably added fuel to the fire.

So I went home and thought about it. What if, in my interactions with my kids, I behaved as if someone was watching me?

Ever noticed, when you are at your mum’s or in-laws house and your kids start acting up, how much patience you have? Or when you are at the park? Oh, definitely now: when other mums are around?

I started noticing.

My tone of voice, my level of calm, my ability to bite my tongue and not join in the snarky-ness. These were all different when other people were around and when in the back of my mind I thought “if she kicks off, I’m going to be filmed as well as her”.

She never had such a big tantrum again. Yes she played up. Yes she got really angry. Yes she got really sad and cried and shouted.

But I did not.

So this is my conclusion:

There is no one more patient than a parent who is being watched. And a watched parent never shouts.

I’ve been struggling with writers block. I have a lot of thoughts going around in my head yet when I come to write… nothing.

So although I never intend to share photos on this blog, these photos are just saying more than I can. I think they are vague enough that you cannot actually see her face as she is now, and that is important to me.

Despite her sometimes paralysing fear of new situations, F has gone off on a 3 day trip with school. There will not be any phone calls home and she is ok with that.

She came home from school yesterday and packed her own bag. Using the “things to bring” list from school, she adapted it for her needs (2 pjs are just not enough so she took 4).

She mumbled that they will probably try and wash her hair and that will be a problem (that’s for a post still be written)

This morning she told us that she was going to miss us and we hugged. She even gave me a kiss (she hates kisses).

Then she wheeled her suitcase out to the bus and off she went.

I’m in awe. So proud and just can’t get my head around this to even think about all the things I want to say. She’s 6 and a half.

I actually wrote this last year but it feels relevant again. After this hectic last 6 months and completing my exam (for those who want to know, I passed!) I really feel like pootling for a bit.

In the Netherlands there is a motorway that is 5 lanes wide, called the A2. It was widened to release congestion and the speed is limited to max 100kph.

At non-peak travel times it is funny to see 3 lanes with traffic and hardly anyone is tempted to speed along in the 4th and 5th lanes. I’m sure the traffic cameras and the speeding fines have something to do with it but I also think it is a part of human nature to follow rules and guidelines.

There is common sense in them. Slowing down reduces congestion at hot spots. It’s safer, you’ll get there around the same time anyway, etc. I kept to the speed limit, I thought I was being a good citizen.

But actually, those aren’t the reasons I kept to the limit. I kept to the limit because I liked it, it was comfortable and quite frankly, after the series of mega unfortunate incidents in my life in the last few years, I have a very great appreciation that it can happen to you.

I’ve seen death approaching and I don’t want to meet him again any time soon.

Hospitals aren’t much fun either and I have had plenty of opportunities to sample their delights on a regular basis so I don’t need a car accident to bring me there too.

So I mosey down the A2 highway and it feels good. I’m glad they set that limit because actually I don’t want to go faster than that anyway and the government gave me permission to drive slowly.

On roads where the limit is 120kph I still only want to drive max 100 but somehow I feel pressure to go faster.

One day I was struck by how funny that is. I am opinionated, decisive and really don’t like being told what to do. Yet I feel like I should go faster than I want to, just because of a road sign. That’s when I realised that the reason I like the A2 so much is that I am relying on someone else to give me permission to be how I want to be. How ridiculous is that?

I could just give myself permission. I do give myself permission. Permission to cruise when I want to, to race when I want to, to stand still when I want to.

So the next time you see a slow poke cruising down the road, it might be me. I’m not trying to get in your way or make you late. I’m feeling good.